SMA Awareness Day #30

 On the home stretch!  One more day to go and I have a couple of shirts left. I did ‘cheat’ and wear a 3/4 sleeve one day and a long sleeve one. We have had some chilly days!  In August!  I always used to think that August was the hottest month but in Vermont it is certainly July which is the hottest. July of 18 was the hottest month in record up here, I believe. It was dreadful. 

Oh so this is one of my favorites.  I like the blue even if it’s not an SMA color.  It’s my ‘go to’ after my pink one.  

Anyway, Casey is still sleeping  Gene is outside with a friend tackling some ‘landscaping’ that has gone to pot.  Along our road out front, we have a row of hedges that have gotten misshapen and overgrown.  Plus, there’s weeds and vines and thistles, oh my.  When they redid our road, there became a bigger discrepancy between the road and the grass so it was hard to mow.  Plus we thought the town was coming back to finish it but that hasn’t happened.  Anyway, I hope that they make some progress.  Gene has equipment but none of it ever seems to work properly without a bunch of tinkering, sigh.  Thankfully, Adam brought some of his tools so my fingers are crossed!  

SMA Awareness Day #21

 

SMA Awareness Day #20

 

SMA Awareness Day #19

 I’m writing this while I wait to be called in for my mammogram. Yay for evening appointments. Much quieter. And I had work done for a crown today.  I have the temporary.  Not my favorite thing to do. And we had a contractor cone today to look at our bathroom project and living room/kitchen project.  Busy day. Casey was not happy because we didn’t have reading group today.  BUT, the Red Sox finally won a game!  I think that they had lost 9 or 10 in a row before today.  Yikes!

Today’s shirt is my pink #cureSMA.  It’s my ‘go to’ shirt many times. I also have a pretty pink mask that matches :)

SMA Awareness Day #18

 This is for our buddy, Lincoln.  Lincoln is a cute who was diagnosed with SMA in early 2018 when was only a couple of months old.Thankfully he received Sprinraza pretty quickly so he is presenting more like a type 2, instead of a type 1.  He is a strong, beautiful boy.  He and his family are fighting the good fight and Lincoln is doing awesome!

Today in reading group, I read a fact book on Vermont.  Of course, the book mentioned Champ. Look at the shirt that Casey just happened to be wearing today!!

SMA Awareness Day #17

 

Don't look at me.  Look at the shirt, lol.  I was night nurse last night and I'm feeling it.  We've had good night coverage lately so I was a little out of practice being night nurse. Casey was actually a pretty good sleeper. He flipped every couple of hours, which is normal.  Pulse ox only beeped once when the probe was coming off his toe.  NUGGET (orange cat) was the biggest interrupter of my sleep.  He came in a bunch of times, harumphing, and wanting me to feed him.  I got up and fed him twice!  He never wakes us when we're upstairs.  

Casey was very excited to finally get his hair cut.  "Dawn 23 Bartlett Road, Monday, hair" is what he was saying all weekend.  

This is the majority of what she cut off of him  

He still has longish hair and he still has some curls.  It looks a lot better. So far he's happy that it got lopped off. 

SMA Awareness Day#16

This is my new purple #CureSMA shirt. I love it!

This morning I made this blueberry yogurt cake. I really wanted to make a brown butter blueberry yogurt cake but it was more complicated so I went for easy. It turned out pretty good. 

 

SMA Awareness Day #15

SMA Awareness Day #14

SMA Awareness Day #13

 Blog is giving me fits right now.  Will update later.

Today.  Quiet day  

Staci came late so I did the morning routine.  Casey insisted on watching Umbrella Academy.  He really likes it  I’m undecided.  

Julie and Bill stopped by for some boxes.

I puttered and I must have done some important things.  

Book group.  Karen finished up a chapter book.  I think I’m up next.  We have a book picked out.  

The Red Sox suck but we still watch.  

SMA Awareness Day #12

Today's shirt.  My boys.  We really don't have a lot of great photos of the two of them together.  We only have done home photos, never professional.  Except, this was at the Reilly's house.  A photographer came and did pics of ALL the boys; 3 of theirs and two of ours.  It was quite a time.  But I love this one. It's faded on this shirt but it's still special to me.  What year was this?  Maybe 2007??

SMA Awareness Day #11

 

SMA Awareness Day #10

 This is one of the shirts that I recently bought. I picked yellow because it’s my favorite color and I don’t have many yellow clothing. What’s that about??  Anyway, if you can’t read it, it says: I Love Someone with SMA and then Spinal Muscular Atrophy in small letters. And that’s true. ❤️

SMA Awareness Day #9

This shirt was from the last Hingham Walk n Roll that we attended. I am pretty sure we made it to this walk. There was a walk one year that it was cold and rainy and we ended up not actually going. But that was kinda okay because it gave us more time to just hang out with the Reilly clan at their house instead of rushing to get 3 SMA kids and numerous adults out of the house by 8 o’clock!  

 I love that they had this silhouette on their shirts for a couple of years  So sweet.  

 

....

Today.  Casey slept in until a bit after 11:00 which is normal for a Sunday.  Since we had finished Stranger Things Casey wanted a Scottish marching band and Gene found some interesting ones on YouTube.  

Projects be damned.  We decided to take a drive to the islands  just for the heck of it-ans did Gene to use his pizza card at  the pizza place up there.  We ended up driving over the drawbridge just because.  Stopped to eat pizza on the causeway.  Beautiful day.  Gene put one of our SMA rocks on one of the pylons.  We’ll see if anyone finds it and posts it on ROCKin’ SMA.  We have 4 other rocks out there and no one has posted :(

Right now I’m listening to Casey fuss to Nurse Alice.  He’s been a crappy sleeper for the last week.  I hope tonight is better.  

SMA International Candle Lighting 2020

 

SMA Awareness Day #8 and International Candle Lighting

 

Another twinning day for me and Casey. I love that he was fine with it. These shirts are the event shirts for our first walk in Vermont in 2015. We had the Sharks shirts made and most of Casey’s team wore those on the day of the walk. But these are special because they are the official Cure SMA shirts and logo for the year.  

I'm going to make a separate post for the Candle Lighting....

SMA Awareness Day #7

Chomp!  Sharks:  Taking a Bite Out of SMA

(See my previous post from today about FDA approval of Risdiplam!)

This shirt was from our very first Vermont Cure SMA walk n roll in May of 2015. Our friend, Alaina, has made mosaic artwork since she was a teen. Casey picked the name Sharks for his team that he Captains. Alaina was gracious and let us use her shark mosaic for the logo. I believe our friend, MJ, came up with the tag line, “Taking a Bite Out of SMA.”  We love it!  

This was a very emotional walk. The walk itself and all the work leading up to it, too. You see, I had just decided to chair the walk and maybe had a telephone meeting when Colin passed away. There is a LOT to do pulling off an event like this especially for the first time. Of course, we had a coordinator from Cure SMA but there was a lot to do. I am not great at approaching businesses for sponsorship or donations but I made myself do it. I’m also not great at asking for help but I asked and I found some help in several local SMA families. 

I also got a great surprise!  It’s a long story but in a nutshell, some out of state friends conspired to keep it a secret that they were attending the walk and surprised the crap and some tears out of me!  Thank you again all of you. 

So there. That’s the story of my shirt!  Casey and I twinned today as he wore his, too. He didn’t even give me a grumpy look when I asked him to wear the same as me :) 

......

Today was a day. I thought it was Saturday most of the day. I forgot to get Gene and Casey up at the regular time because they usually sleep in on Saturdays. I also made my weekend “to do” list. 

Not much happened. Casey and I watched two episodes of Stranger Things. We only have about 2 episodes to go. We’ll be bummed when it’s all over. 

Aunt Chris came and they did their thing. 

Oh I got a huge load of laundry out on the line today. Perfect day for it. It’s even all folded and 2/3 put away. 

Red Sox are beating Toronto right now so I’m holding my breath they keep the lead. 

SMA Awareness Day #7 HUGE news!

I will still make my t-shirt post but this news deserves a post of it's own.  

This is what we've been patiently/impatiently waiting for. This is a drug that Casey can take via g-tube.  It targets SMN 2 levels in SMA patients which is kind of like a back up for what those with SMA are missing/or mutated.  It works to boost the level so that the cells can do the job that they are supposed to do in the body. This is not a cure.  Casey will not miraculously be able to do all the the things that SMA has robbed him of, that most people take for granted, but it may keep his body from weakening even more, and we hope that he may gain a tiny bit of movement back.  We will have to see how he responds to it.  

You may remember that Casey was previously on Spinraza, which was the first ever FDA approved treatment for SMA. That works in a similar way to Risdiplam but Spinraza must be given via lumbar puncture every four months.  Casey didn't have an easy time with Spinraza. There's blood work needed before each dose, then had to receive his dose under anesthesia. Not a fun, quick or easy process.  Then repeat every 4 months.  Casey's last dose was in December.  He was due for his next dose in April.  Because of Covid it was delayed some and then he, himself, said he didn't want to continue anymore.  It was too stressful and we didn't see much improvement.  Initially his heart rate went to a more normal level and that was huge for him.  But not much improvement in movement at all.  As a matter of fact, during this treatment time he lost the use of his right thumb.  That was devastating. He used that thumb for accessing his device.  Now he uses a switch on a pair of glasses to access the device by blinking/moving his eyebrows.  I would just about do anything for him to be able to use his thumb again.  

So we have hope with this FDA approval.  Many of Casey's peers are already on this drug as they applied through an early access/compassionate use program.  Our hospital was not set up to do this so there was no way Casey was going to get early access.  I just hope that our doc will do what he needs to do to get this going for Casey ASAP.   

Just FYI, this is actually the 3rd FDA approved treatment for SMA,  The second was gene therapy/Zolgensma which is AMAZING but it's only for kids under 2.  Zolgensma is changing EVERYthing for these babies. And with SMA getting on newborn screening in 32 states now, so many babies will be helped before they lose their strength.  These babies will be able to get treated even before signs of SMA show up so they will have a super good chance to hit all milestones and BEAT SMA's butt.  

Here are a couple of links on Risdiplam.

Cure SMA on Risdiplam approval

Business wire on Risdiplam

Business Insider on Risdiplam

THANK you everyone who has ever helped us with a fundraiser or donated or said prayers for a cure.  You all have had a part in this coming to fruition!!

SMA Awareness Day #6

I didn't think too much about which shirt to wear today because I just grabbed the top of my pile because I was rushing to get ready as Casey had an appointment at the hospital this morning. But, it is one of my favorites.  I have this orange #CureSMA shirt and a blue one.  I had a purple one but I trashed it with bleach so I just ordered another.  I hope it comes before the end of the month!   Orange and purple are the colors of Cure SMA so I like wearing them, especially during SMA awareness month.  

****OH and this Saturday is the annual candle lighting!****

August is SMA Awareness Month and we choose the second Saturday in August to remember those who have lost their battle with Spinal Muscular Atrophy (SMA) and to honor those living with SMA. We hope to spread awareness and unity to all families, especially during this most difficult time. Join us to light a candle and spread the light around the world on Facebook. Light a candle from anywhere at sunset on Saturday, August 8, 2020

Here we are at the hospital. Casey had an infusion today to help increase his bone density and treat his osteopenia.  Years ago he and Colin had an infusion of a medication that took hours to deliver and had to be given over two days.  This medication was given over a half an hour and didn't require any blood test before hand,either.  The nurses were very nice and efficient.  The worst part was waiting for the IV nurse to arrive.  She got him on the second try.  

Gene dropped Nurse Staci, Casey and I off and he drove somewhere and found some wifi and did some work.  He also picked up a pizza from Marcos :) We arrived at 9:45 and hit the van by 12:15 so that's not too bad.  

Casey had a shower to get off any hospital germs.  I took a quick nap. I am always so drained after being in that place.  OH, we saw our old nurse, Karen, so that was cool. 

Casey started feeling yucky.  We were warned that after the infusion you could feel symptoms similar to having the flu; achy, tired, etc.  I hope that since he has had a similar med before that it wouldn't affect him but it did.  Each time he gets it he should have less affects. 

Reading group was fun today.  We have a new participant and it was great to have her.  I think she'll be a good fit in our little group. 

SMA Awareness Day #5

Today's shirt is brought to you by Laughing at my Nightmare.  Shane Burcaw is a guy living with 
SMA type 2. To sum Shane up in a paragraph on this blog would be shameful.  He is so much more than one little paragraph in my blog!  He shares everything about his life with SMA; real and raw, the good, the bad and the everything!  He is an author, blogger,YouTuber, Instagramer, motivational speaker, fundraiser and advocate. Casey and I read his first book together and Casey was very enthralled.  He started his second book but Gene kind of put the kabash on it for several reasons.  I will revisit his reasons and then we will decide if he should continue reading it. I won't get into the why's here...But anyway, check him out. He is VERY funny.  He and his cousin, Sarah, started the organization back in 2012. The organization has grown wildly since then. It might be fun for you to check out their website. And Definitely check out Squirmy and Grubs on YouTube. Shane and his fiancee (how do I put the accent in???) candidly share their life together; all the challenges and the good stuff, too!

.......

I went to the dentist today.  They are super duper careful.  I didn't get polished!  I guess that the polishing spews too many droplets so they are not doing them. Thanks, Covid. Stinks. I also will be getting a crown. I've been chewing on one side of my mouth for 6 months. At least I haven't been sensitive to hot and cold like last time.That was awful. 

Casey had a better day today.  He was more his normal vocalizing self and not the crazy yelling like yesterday.  We ended up changing out his trach at bedtime last night because he sounded froggy and I could't clear him.  He had a blob on the outside of his trach.  Wondering if that bugged him and triggered a bigger than normal ANS 'storm.' I've heard that some people get agitated or grumpy and feel out of sorts when they have a storm. 

This afternoon, instead of book group, a few of us joined the Norfolk, MA library for a book reading. Unbeatable Betty is a kids book about the first woman to win a gold medal in track and field in the Olympics-1932!  It was a good reading and discussion.  I love that libraries have fun things like this. I have to remember to look at the opportunities our library has for fun things. 

SMA Awareness Day #4

Today's shirt is for Garrison.  Garrison was our little buddy who touched many lives in his short time on earth. One year ago today his mom had to do the unthinkable and take him off life support after he coded.  I don't want for my posts to be only full of sadness.  This one will be because today should also be another little boy's 14th birthday. Our buddy, Daniel, passed away in 2012 from complications of SMA. He is missed by so many people. I'm sure he is in Heaven celebrating today with his mom,Connie, who is also in Heaven.  Our Collie is surely with them as well but Daniel leaves many family and friends feeling sad and having their hearts ache since he is no longer with us on earth.  

Garrison loved all sorts of rescue vehicles. Thus the firetruck on this shirt.  I know that there was a parade of rescue vehicles that drove by for his celebration of life.💙

This is a pic of Casey, Colin and Daniel's hands. What more to say? They were the best buddies.  One of my favorite memories is when Daniel's dad gave Casey $20 for 'babysitting' Daniel. Casey loved that he was a mentor and big buddy to Daniel. Colin loved showing Daniel all the fun board games he had.Those were good times. 

......

Highlights of day.  Not much.  Casey was a super duper grump.  He also had some new 'hot' patches on one leg. Many kids with SMA have ANS storms or autonomic dysfunction or dysautomia. There's not a lot to do for it except treat symptoms and ride out the 'storm'. We're getting some affects from a tropical storm, so I'm now wondering if the pressure changes are bugging him somehow. I know that I woke with a headache and it hasn't left all day. Nothing could dissuade him from vocalizing like a crazy man. Got him down from chair to table. Helped a little but it's so hard to tell what's bugging him.  He has his device but usually only gves us one word answers to what is wrong.  It doesn't usually help us solve the problem.  He got a little more calm during reading group.  He likes when Karen reads about The Beatles. Then he had some time to chill out with YouTube and watched some walk throughs of Wizard 101.  Red Sox now.  Maybe if the Red Sox win everything will magically be better????

SMA Awareness Day #3

Today's shirt is from New England Cure SMA Walk N Roll in Hingham, Massachussetts.  This was from the 12th annual walk which took place on May 19, 2012.   I'm sure I have shirts from previous walks there but I must have retired them to the attic.  My dresser can only hold so many t-shirts!  As it is, I have to rotate them halfway through the season so that I wear them all.  

This walk was the first ever Cure SMA event that our family attended. I don't remember which was our first year, but it was before this.  I'll ask Karen as she may remember!  I have some good pics of this day so maybe I'll add them later.  

One of the reasons this fundraiser is near and dear to my heart is because one of the chairs of the event had two children with SMA type 1.  They were around Casey's age and Colin's age. Both kids passed away at early age from complications of SMA.  This family was determined to raise money for research in honor/memory of their kids.  For 20 years they have been holding their Walk N Roll and they have grown each year.  This walk is one of the biggest and most successful for Cure SMA.  We attended this walk many years. It inspired us to start our own walk in Vermont which we did for the first time in 2015.  Our totals are a drop in the bucket to this walk but I am proud to have started a Vermont walk and have united some of the families in the area. Of course, Vermont has a much smaller population than Massachusetts and only a fraction of affected families, but we are proud of our fundraising and the awareness we have spread.   

.....

Today.  Let's see.  Highlight of the day was dissecting owl pellets with our reading group. Yes, you read that right!  In the reading group, we tend to read a lot of non-fiction and at least one of our readings included talking about owls.  We learned that owls eat things like rodents but they cannot digest their bones so it forms inside them in balls of hair and bones such.  Then, a couple of times a day, the owl regurgitates the 'pellet'. We all bought kits that included sterilized owl pellets, a magnifying glass, tweezers/forceps and a booklet with diagrams.  It took us a while to find a date that everyone could participate and today was that day!

Nurse Staci was excited to do the dissecting and I was very grateful for that.  It was very cool but I was glad to be a viewer.  I think the kids enjoyed it.  I KNOW the adults did!!

SMA Awareness Day #2

Day #2 today.  I chose this shirt because it has both of our boys names on it.  I wish I could remember who started this T-shirt campaign but I don't remember.  Bad on me.  But it has the Cure SMA logo on the front and angel and warrior names on the back.  I like it.  See if you can spy both Casey and Colin's names.

What else for today?  I guess the biggest thing is the water leak in the living room.  Ugh.  We've been putting off redoing the ceiling and flooring for years.  We're REALLY good at putting things off.  Well, it may be the time that we have to move on it.  Gene has a call into the plumber but we haven't heard back yet.  We're on a slab so all our pipes go through the ceiling somehow.  Thankfully Casey and I have had a shower today, I'm caught up on laundry and we ran the dishwasher yesterday.  I have no idea what will happen next.  

I have a big urge to declutter in the living room.  So I started.  It's a drop in the bucket but it's a start.  I'm definitely going to part with some books and some knickknacks.  I founds new homes for a few things.  Big news--Gene went through some DVDs and found a few to part with!  Whooo hoo!!!!

I'm in the house alone for a few minutes. Chris was here for a little bit but she has left.   Gene and Casey just headed out for a walk.  A TORNADO watch just came up on our weather apps.  Mind you, we live in north-west, Vermont which is not a hot spot for such weather.  We'll keep an eye on the apps and TV but I doubt it will actually come to fruition.  

Off to declutter some more!

SMA Awareness Day #1

It's been hard to blog since Colin died.  I felt like writing about our lives afterwards would emphasize him not being part of the family anymore since he is not physically with us.  It's true, he's not physically here with us but he is still with us in our hearts every second of every day and in everything we do.  So, I'm going to try to get past that and start blogging again.  The memories that are evoked by reading past posts are so comforting and usually can make me smile.  I want to do more of that. 

Today starts SMA Awareness month. As SMA families usually say "every day is SMA Awareness for us."  Let's then say that this is the month that we try to spread awareness as an entire community.  AND, next Saturday is the world wide candle lighting.  More on that later. 

SMA Awareness Day #1:

Wearing my SMAMomStrong; Stronger Together shirt on this 1st day of August.  

I guess it's not a secret that we have a group for us SMA moms :)  It's a safe place for us to share, vent, support, etc.  So, of course we needed a shirt to reflect what this group means to us.  One of the moms has a business of selling apparel, mugs, signs, etc that was started in honor of their baby boy, Jack.  Jack had SMA type 1 and passed away in 2011.  The mom offered to create logo and produce shirts for our group.  I think they turned out great!  I also have a long sleeved, lightweight hoodie which I look forward to wearing this fall. 

Check out Jumping Jack Apparel and click on the About Us tab to learn more about Jack Jack.  💟

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Just a recap of today's highlights.

Got two loads of laundry on the line today!  Beautiful day, albeit a bit hot but not unbearably so.  I also did a little dead-heading of my poor plants that are still hanging on and a little weeding out front.  Nurse Julie came at noon and woke up sleepyhead.  They did their thing.  Aunt Chris came in the afternoon.  

Big happenings next door.  Big party that's been in planning for ages as it got postponed due to Covid.  We knew the secret which was that Leland was going to propose to his girlfriend.  Casey has been obsessing over it for awhile.  He has a crush on Nicki.  Aunt Chris, Casey and Julie head over and found a spot outside their yard, under the big weeping willow where they had a good view of the band.  Gene and I headed over closer to when the band was to start at 3:45.  We brought some chairs and some cushions.  It was nice because we had a little breeze, could see and hear well, but we weren't near anyone.  No one wore masks. We stayed for the whole first set and I videoed the proposal.  She said, "yes!" Headed back a little after 5.  Poor Jaxon had his supper 5 minutes late.  

Watching Red Sox now.  So happy to have baseball even if it's a short and very odd season.